"Living with Loss": A qualitative exploration of existential fears among people with advanced lung cancer in online lung cancer support groups.

OBJECTIVES: With targeted therapies, people are surviving longer with advanced lung cancer and engaging in online lung cancer support communities. While these groups provide a sense of community, witnessing the death of peers can lead to emotional distress. This qualitative study aims to (1) explore the experience of witnessing death in online cancer support groups; (2) identify factors that contribute to the emotional struggles of witnessing the death of peers; and (3) identify strategies/options for dealing with losses in the cancer community. METHODS: We conducted a cross-sectional analysis of qualitative interviews exploring existential concerns with participants (n = 25) from oncogene-specific online lung cancer support groups. The principal investigator conducted study interviews between August 2018 and March 2019 where participants were asked about their cancer experiences and existential concerns. We used thematic analysis and NVIVO 11 software to examine and store the de-identified interview data. RESULTS: Participants indicated that they had often witnessed their peers die and felt the pain of the loss. Factors that played a part in their struggle with witnessing others' death included the closeness of the relationship with the person, the age of the person who died, seeing oneself in the experience of the other dying, disparities in care, and losing touch in the final stages. Participants used varied coping strategies such as celebrating the life of the individual who died, engaging in advocacy efforts, not focusing on the loss, participating in therapy, and bringing self-preserving thoughts. SIGNIFICANCE OF RESULTS: Our study highlights the importance of addressing existential fears in online lung cancer support groups and incorporating conversations about death in spaces that deal with cancer.

Factors leading to disparity in lung cancer diagnosis among black/African American communities in the USA: a qualitative study.

OBJECTIVE: This study has two objectives: first, to explore the diagnostic experiences of black/African American (BAA) patients with lung cancer to pinpoint pitfalls, suboptimal experiences and instances of discrimination leading to disparities in outcomes compared with patients of other ethnic backgrounds, especially white patients. The second objective is to identify the underlying causes contributing to health disparities in the diagnosis of lung cancer among BAA patients. METHODS: We employed a phenomenological research approach, guiding in-depth interviews with patients self-identifying as BAA diagnosed with lung cancer, as well as caregivers, healthcare professionals and community advocates knowledgeable about BAA experiences with lung cancer. We performed thematic analysis to identify experiences at patient, primary care and specialist levels. Contributing factors were identified using the National Institute of Minority Health and Health Disparities (NIMHD) health disparity model. RESULTS: From March to November 2021, we conducted individual interviews with 19 participants, including 9 patients/caregivers and 10 providers/advocates. Participants reported recurring and increased pain before seeking treatment, treatment for non-cancer illnesses, delays in diagnostic tests and referrals, poor communication and bias when dealing with specialists and primary care providers. Factors contributing to suboptimal experiences included reluctance by insurers to cover costs, provider unwillingness to conduct comprehensive testing, provider bias in recommending treatment, high healthcare costs, and lack of healthcare facilities and qualified staff to provide necessary support. However, some participants reported positive experiences due to their insurance, availability of services and having an empowered support structure. CONCLUSIONS: BAA patients and caregivers encountered suboptimal experiences during their care. The NIMHD model is a useful framework to organise factors contributing to these experiences that may be leading to health disparities. Additional research is needed to fully capture the extent of these experiences and identify ways to improve BAA patient experiences in the lung cancer diagnosis pathway.

Patient-led advocacy in ALK-positive lung cancer.

Patient-led advocacy organizations in the anaplastic lymphoma kinase (ALK)-positive lung cancer space are becoming increasingly influential. ALK Positive Inc. (hereafter "ALK Positive") is probably the most widely known among these organizations. Evolving from a private Facebook Support Group created in 2015 to provide a forum for ALK-positive lung cancer patients and caregivers to exchange information, empathy and support, ALK Positive transitioned in 2021 into a 501(c)(3) non-profit organization (NPO), with the mission to improve the life expectancy and quality of life for ALK-positive cancer patients worldwide. This review provides a historical perspective on the growth, activities and aspirations of ALK Positive to pursue patient advocacy and enable development of new therapies for individuals with ALK-positive cancers. This growth has been enabled by the collaborative efforts of ALK-positive cancer patients, their care-partners and oncologists, academic researchers, other NPO advocacy organizations, and members of the biotech and pharma communities who develop new therapies for ALK-positive cancers. ALK Positive has grown to provide a variety of patient services, to award competitive support for translational research and clinical trials intended to enable new therapies and improved quality and extent of life for ALK-positive cancer patients, and to collaborate with industry and academia to accelerate the development of improved therapies for ALK-positive cancer patients. ALK Positive continues grappling with a variety of challenges including further improving patient quality of life, enabling the development of new therapies, and extending its already substantial global reach and impact. This review summarizes many of the tangible impacts and aspirations engendered by ALK Positive for ALK-positive cancer patients in the past, present and future tenses-where we have been, where we stand and where we hope to go. The content is based on the historical recollections of the authors, and is accurate as of November 30, 2022, to the best of the authors' knowledge.

Previous Health Care Experiences' Influence on Health Care Perceptions Among Residents of Six Homeless Shelters in Seattle, Washington, July-October 2021.

Purpose: The study purpose was to learn and describe 1) where homeless shelter residents receive health care, 2) what contributes to positive or negative health care experiences among shelter residents, and 3) shelter resident perceptions toward health care. Methods: Semi-structured interviews (SSIs) utilizing purposive sampling and focus group discussions (FGDs) utilizing convenience sampling were conducted at 6 homeless shelters in Seattle-King County, Washington, during July-October 2021. All residents (age ≥18) were eligible to participate. SSIs were conducted with 25 residents, and 8 FGDs were held. Thematic analysis was conducted using Dedoose. Results: Participants received health care in settings ranging from no regular care to primary care providers. Four elements emerged as contributing positively and negatively to health care experiences: 1) ability to access health care financially, physically, and technologically; 2) clarity of communication from providers and staff about appointment logistics, diagnoses, and treatment options; 3) ease of securing timely follow-up services; and 4) respect versus stigma and discrimination from providers and staff. Participants who felt positively toward health care found low- or no-cost care to be widely available and encouraged others to seek care. However, some participants described health care in the United States as greedy, classist, discriminatory, and untrustworthy. Participants reported delaying care and self-medicating in anticipation of discrimination. Conclusions: Findings demonstrate that while people experiencing homelessness can have positive experiences with health care, many have faced negative interactions with health systems. Improving the patient experience for those experiencing homelessness can increase engagement and improve health outcomes.

Integrating Immigrant Health Professionals into the U.S. Healthcare Workforce: Barriers and Solutions.

Internationally educated immigrant healthcare workers face skill underutilization working in lower-skilled healthcare jobs or outside healthcare. This study explored barriers to and solutions for integrating immigrant health professionals. Content analysis identifying key themes from semi-structured qualitative interviews with representatives from Welcome Back Centers (WBCs) and partner organizations. 18 participants completed interviews. Barriers facing immigrant health professionals included lack of access to resources, financial constraints, language difficulties, credentialing challenges, prejudice, and investment in current occupations. Barriers facing programs that assist immigrant health professionals included eligibility restrictions, funding challenges, program workforce instability, recruitment difficulties, difficulty maintaining connection, and pandemic challenges. Long-term program success depended on partner networks, advocacy, addressing prejudice, a client-centered approach, diverse resources and services, and conducting research. Initiatives to integrate immigrant health professionals require multi-level responses to diverse needs and collaborations among organizations that support immigrant health professionals, healthcare systems, labor, and other stakeholders.

Symptoms and signs of lung cancer prior to diagnosis: case-control study using electronic health records from ambulatory care within a large US-based tertiary care centre.

OBJECTIVE: Lung cancer is the most common cause of cancer-related death in the USA. While most patients are diagnosed following symptomatic presentation, no studies have compared symptoms and physical examination signs at or prior to diagnosis from electronic health records (EHRs) in the USA. We aimed to identify symptoms and signs in patients prior to diagnosis in EHR data. DESIGN: Case-control study. SETTING: Ambulatory care clinics at a large tertiary care academic health centre in the USA. PARTICIPANTS, OUTCOMES: We studied 698 primary lung cancer cases in adults diagnosed between 1 January 2012 and 31 December 2019, and 6841 controls matched by age, sex, smoking status and type of clinic. Coded and free-text data from the EHR were extracted from 2 years prior to diagnosis date for cases and index date for controls. Univariate and multivariable conditional logistic regression were used to identify symptoms and signs associated with lung cancer at time of diagnosis, and 1, 3, 6 and 12 months before the diagnosis/index dates. RESULTS: Eleven symptoms and signs recorded during the study period were associated with a significantly higher chance of being a lung cancer case in multivariable analyses. Of these, seven were significantly associated with lung cancer 6 months prior to diagnosis: haemoptysis (OR 3.2, 95% CI 1.9 to 5.3), cough (OR 3.1, 95% CI 2.4 to 4.0), chest crackles or wheeze (OR 3.1, 95% CI 2.3 to 4.1), bone pain (OR 2.7, 95% CI 2.1 to 3.6), back pain (OR 2.5, 95% CI 1.9 to 3.2), weight loss (OR 2.1, 95% CI 1.5 to 2.8) and fatigue (OR 1.6, 95% CI 1.3 to 2.1). CONCLUSIONS: Patients diagnosed with lung cancer appear to have symptoms and signs recorded in the EHR that distinguish them from similar matched patients in ambulatory care, often 6 months or more before diagnosis. These findings suggest opportunities to improve the diagnostic process for lung cancer.

How to Sponsor, Coach, and Mentor: A Qualitative Study With Family Medicine Department Chairs.

BACKGROUND AND OBJECTIVES: The goal of this study was to explore how to use sponsoring, coaching, and mentoring (SCM) for faculty development by clarifying the functions embedded in SCM. The study aims to ensure that department chairs can be intentional in providing those functions and/or playing those roles for the benefit of all their faculty. METHODS: We used qualitative, semistructured interviews in this study. We followed a purposeful sampling strategy to recruit a diverse sample of family medicine department chairs across the United States. Participants were asked about their experiences receiving and providing sponsoring, coaching, and mentoring. We iteratively coded audio recorded and transcribed interviews for content and themes. RESULTS: We interviewed 20 participants between December 2020 and May 2021 to identify actions associated with sponsoring, coaching, and mentoring. Participants identified six main actions sponsors perform. These actions are identifying opportunities, recognizing an individual's strengths, encouraging opportunity-seeking, offering tangible support, optimizing candidacy, nominating as a candidate, and promising support. In contrast, they identified seven main actions a coach performs. These are clarifying, advising, giving resources, performing critical appraisals, giving feedback, reflecting, and scaffolding (ie, providing support while learning). Finally, participants identified six main actions the mentors perform. The list includes checking in, listening, sharing wisdom, directing, supporting, and collaborating. CONCLUSIONS: We present SCM as an identifiable series of actions that need to be thought of and performed intentionally. Our clarification will help leaders purposefully select their actions and allows opportunity for evaluating their effectiveness. Future research will explore developing and evaluating programs that support learning how to provide SCM in order to enhance the process of faculty development and provide it equitably.

Trends and factors associated with change in COVID-19 vaccination intent among residents and staff in six Seattle homeless shelters, March 2020 to August 2021.

Introduction: Achieving high COVID-19 vaccination coverage in homeless shelters is critical in preventing morbidity, mortality, and outbreaks, however, vaccination coverage remains lower among people experiencing homelessness (PEH) than the general population. Methods: We conducted a cross-sectional study to retrospectively describe attitudes and identify factors associated with change in COVID-19 vaccination intent among shelter residents and staff during March 2020 - August 2021. To identify factors associated with change in COVID-19 vaccine intent becoming more positive overall compared to other attitudes, we utilized a Poisson model to calculate Risk Ratios with robust standard errors, adjusting for confounding by shelter site and demographic variables determined a priori. Results: From July 12 - August 2, 2021, 97 residents and 20 staff participated in surveys across six shelters in Seattle King County, Washington. Intent to be vaccinated against COVID-19 increased from 45.3 % (n = 53) when recalling attitudes in March 2020 to 74.4 % (n = 87) as of August 2021, and was similar among residents and staff. Many participants (43.6 %, n = 51) indicated feeling increasingly accepting about receiving a COVID-19 vaccine since March 2020, while 13.7 % (n = 16) changed back and forth, 10.3 % (n = 12) became more hesitant, and 32.5 % (n = 38) had no change in intent. In the model examining the relationship between becoming more positive about receiving a COVID-19 vaccine compared to all other attitudes (n = 116), we found a 57.2 % increase in vaccine acceptability (RR 1.57; 95 % CI: 1.01, 2.45) among those who reported worsening mental health since the start of the pandemic. Conclusions: Findings highlight opportunities to improve communication with residents and staff about COVID-19 vaccination and support a need for continued dialogue and a person-centered approach to understanding the sociocultural complexities and dynamism of vaccine attitudes at shelters.Clinical Trial Registry Number: NCT04141917.

The AYA Care Plan: Initial Evaluation of a Web-Based Psychosocial Intervention.

PURPOSE: Adolescents and young adults (AYA) with cancer do not fit neatly into pediatric or older adult oncology care settings. Recent efforts have led to the development of psychosocial interventions for AYAs, but studies show AYAs demonstrate low levels of engagement in psychosocial services. The AYA Care Plan is one of the only web-based tools providing a personalized, psychosocial resource that addresses unmet needs for AYAs in active treatment and post-treatment survivorship. The current study aims to assess the usability and utility of the AYA Care Plan and identify opportunities for improvement. METHODS: Clinic staff administered an online distress and needs assessment to AYA patients with cancer at outpatient oncology clinics. Personalized care plans were sent to participants on the basis of their responses. A total of 11 AYAs between the ages 18 and 39 years, with a mean age of 31.64 years, then completed qualitative interviews about their experiences. Thematic analysis was used to identify themes on the AYA Care Plan. RESULTS: A majority of participants reported positive usability features. Half of the participants reported using their care plan to make health care decisions. One person indicated not finding the resources helpful, and the other half of participants reported not engaging with the care plan. Participants also offered suggestions for improvement. CONCLUSION: The AYA Care Plan appears to be a useful psychosocial intervention for some AYAs with cancer. Future research should continue to examine the AYA Care Plan's usability and utility, and specify when, how, and for whom the AYA Care Plan is useful.

A qualitative study of interactions with oncologists among patients with advanced lung cancer.

INTRODUCTION: To support the care of lung cancer patients, oncologists have needed to stay current on treatment advancements and build relationships with a new group of survivors in an era where lung cancer survivorship has been re-defined. The objectives of the study were to (1) understand the perspectives of advanced lung cancer patients whose tumors have oncogenic alterations about their care experiences with their oncologist(s) and (2) describe the perceptions of advanced lung cancer patients about seeking second opinions and navigating care decisions. METHODS: In this qualitative study, patients with advanced lung cancer (n = 25) on targeted therapies were interviewed to discuss their ongoing experience with their oncologists. We used deductive and inductive qualitative approaches in the coding of the data. We organized the data using the self-determination framework. RESULTS: Patients described both positive and negative aspects of their care as related to autonomy, provider competency, and connectedness. Patients sought second opinions for three primary reasons: expertise, authoritative advice, and access to clinical trial opportunities. When there is disagreement in the treatment plan between the primary oncologist and the specialist, there can be confusion and tension, and patients have to make difficult choices about their path forward. CONCLUSIONS: Patients value interactions that support their autonomy, demonstrate the competency of their providers, and foster connectedness. To ensure that patients receive quality and goal-concordant care, developing decision aids and education materials that help patients negotiate recommendations from two providers is an area that deserves further attention.

Development and evaluation of a virtual patient-centered outcomes research training program for the cystic fibrosis community.

BACKGROUND: Patient-centered outcomes research (PCOR) emphasizes patient-generated research priorities and outcomes, and engages patients throughout every stage of the research process. In the cystic fibrosis (CF) community, patients frequently provide input into research studies, but rarely are integrated onto research teams. Therefore, we developed and evaluated a virtual pilot PCOR training program to build PCOR capacity in the CF community (patients, caregivers, researchers, nonprofit stakeholders and providers). We aimed to show changes among participants' perceived PCOR knowledge (a.k.a PCOR knowledge), confidence in engaging stakeholders, and post-training session satisfaction. METHODS: Guided by a prior CF community educational needs assessment, our researcher and patient-partner team co-developed a four-part virtual online training program. We structured the program towards two learner groups: patients/caregivers and researchers/providers. We evaluated participants' PCOR knowledge, confidence in engaging stakeholders, and session satisfaction by administering 5-point Likert participant surveys. We tested for significant differences between median ratings pre- and post-training. RESULTS: A total of 28 patients/caregivers, and 31 researchers/providers participated. For both learner groups, we found the training resulted in significantly higher PCOR knowledge scores regarding "levels of engagement" (p = .008). For the patient/caregiver group, training significantly increased their PCOR knowledge about the barriers/enablers to doing PCOR (p = .017), effective PCOR team elements (p = .039), active participation (p = .012), and identifying solutions for successful PCOR teams (p = .021). For the researcher/healthcare provider group, training significantly increased participants' ability to describe PCOR core principles (p = .016), identify patient-partners (p = .039), formulate research from patient-driven priorities (p = .039), and describe engagement in research grants (p = .006). No learner group had significant changes in their confidence score. Most participants were either "satisfied" or "very satisfied" with the training program. CONCLUSIONS: Overall, our virtual pilot PCOR training program was well received by patients, caregivers, researchers and providers in the CF community. Participants significantly improved their perceived knowledge with core PCOR learning items. Trial registration Retrospectively registered at clinicaltrials.gov (NCT04999865).

Cystic fibrosis (CF) is a rare, genetic disease; meaning people are born with the disease and have it throughout their lives. CF is a multi-system disease, primarily affecting the respiratory system. Daily care for people with CF (PwCF) includes taking many medications and breathing treatments. Many PwCF have experienced participating in research as research subjects, but not as partners on research teams participating as experts with the lived experience. Including patient and caregiver partners on research teams is important to improve quality of research. By working alongside each other, patient and/or caregiver partners and researchers build trust. Together, they pursue research questions deemed most important to patients and through this inclusive process, study findings are more rapidly adapted by patients and their communities. We found in a prior survey that 85% of patients, caregivers, healthcare providers and researchers in the CF community wanted training on how to include patient partners onto research teams. Our researcher and patient-partner team co-developed a four-part virtual pilot online training program focused on how to integrate patients/caregivers into research teams. This study aims to show changes in participants' perceived knowledge, confidence in engaging stakeholders and satisfaction after participating in our training program. Participants included patients, caregivers, researchers and health care providers. We found that our training program improved knowledge about patient-engaged principles for all participants. This training program stands ready to serve as a model for further development to help increase capacity around patient and stakeholder engagement on research teams in the CF community.

Appraising and Handling COVID-19 Information: A Qualitative Study.

BACKGROUND: The coronavirus pandemic brought vast quantities of new information to the public for rapid consumption. This study explored how people most impacted by the pandemic have judged and perceived the quality of information regarding COVID-19 and regulated the information flow. METHODS: This was a qualitative study of semi-structured interviews developed as a pragmatic study targeting several groups most impacted by the pandemic. Participants were identified through convenience, purposive, and snowball sampling methods. They were interviewed by phone or video conference. RESULTS: Twenty-five participants were interviewed between 6 April 2020 and 1 May 2020. In terms of verifying information and judging its quality, people judged information by the source. People compared information across sources and attempted to verify the quality. Most felt self-assured about their capacity to judge information. Regarding the quality of information, many participants felt the information was skewed or inaccurate. Contradictory information was confusing, especially with a strong suspicion of ulterior motives of information sources impacting trust in the provided information. Yet, some recognized the iterative process of healthcare-related information. In terms of regulating information flow, many participants perceived flooding with information. To counter information overload, some became selective with types of information input. Many developed the habit of taking breaks periodically. CONCLUSION: Improving risk communication in a pandemic is of paramount importance. Organizations working in public health must develop ways to regulate information flow in collaboration with trusted community partners. Individuals also must develop strategies to improve information management.

Family Medicine Resident Knowledge of Adverse Childhood Experiences.

INTRODUCTION: Exposure to adverse childhood experiences (ACEs) has been associated with poor health in adulthood. Primary care providers can provide more appropriate medical care and intervene if they ask patients about ACEs. The purpose of this study is to determine existing knowledge and attitudes about ACEs among family medicine residents within the Washington, Wyoming, Alaska, Montana, and Idaho (WWAMI) region. METHODS: Researchers developed a nine-question survey to assess family medicine residents' knowledge and attitudes about ACEs, and their comfort level in addressing ACEs. The survey was distributed to 540 residents in 22 family medicine residency programs in the WWAMI region. RESULTS: Most residents reported they had some (32%) or moderate (35%) knowledge of the ACEs study. However, 30% reported no knowledge of the ACEs study, and very few (3%) reported significant knowledge. Of 117 respondents reporting at least some prior knowledge of ACEs, 42% had first heard about ACEs during residency. The ACEs topics that respondents felt least comfortable addressing during a patient encounter were a patient's personal history of sexual abuse (75%) and witnessing physical abuse (47%). Most residents (84%) indicated that they would like to see ACEs integrated into their residency curriculum. DISCUSSION: This study demonstrates a gap in residency training on the topic of ACEs in family medicine residencies within the WWAMI region. Residents are uncomfortable addressing ACEs with patients but are receptive to learning about this topic. More teaching about ACEs can increase residents' comfort level with addressing these topics in the primary care setting.

Experiences along the diagnostic pathway for patients with advanced lung cancer in the USA: a qualitative study.

BACKGROUND: Most patients with lung cancer are diagnosed at advanced stages. However, the advent of oral targeted therapies has improved the prognosis of many patients with lung cancer. PURPOSE: We aimed to understand the diagnostic experiences of patients with advanced lung cancer with oncogenic mutations. METHODS: Qualitative interviews were conducted with patients with advanced or metastatic non-small cell lung cancer with oncogenic alterations. Patients were recruited from online support groups within the USA. Interviews were conducted remotely or in person. Analysis used an iterative inductive and deductive process. Themes were mapped to the Model for Pathways to Treatment. RESULTS: 40 patients (12 male and 28 female) with a median age of 48 were included. We identified nine distinct themes. During the 'patient interval', individuals became concerned about symptoms, but often attributed them to other causes. Prolonged or more severe symptoms prompted care-seeking. During the 'primary care interval', doctors initially treated for illnesses other than cancer. Discovery of an imaging abnormality was a turning point in diagnostic pathways. Occasionally, severity of symptoms prompted patients to seek emergency care. During the 'secondary care interval', obtaining tissue samples was pivotal in confirming diagnosis. Delays in accessing oncology care sometimes led to patient distress. Obtaining genetic testing was crucial in directing patients to receive targeted treatments. CONCLUSIONS: Patients experienced multiple different routes to their diagnosis. Some patients perceived delays, inefficiencies and lack of coordination, which could be distressing. Shifting the stage of diagnosis of lung cancer to optimise the impact of targeted therapies will require concerted efforts in early detection.

Coaching, Mentoring, and Sponsoring as Career Development Tools.

BACKGROUND AND OBJECTIVES: Coaching, mentoring, and sponsoring are tools academic leaders can utilize to develop junior faculty. Each tool has a unique goal, time frame and method. It has been suggested that sponsoring may be a particularly useful tool for furthering the careers of women in medicine. Our primary aim was to understand to what extent one group of academic leaders-family medicine department chairs-have benefited from each tool in their own career development and how often they use each to develop others. A secondary aim was to compare women's experiences with sponsorship to their male colleagues. METHODS: We surveyed all US family medicine department chairs electronically about their experiences with coaching, mentoring, and sponsoring. We collected data from August 2019 to October 2019. RESULTS: One hundred five of 193 family medicine department chairs responded to our survey (54.4% response rate). Most indicated that mentoring played a significant role in their career development, with fewer reporting coaching and sponsorship played significant roles. More reported frequent use of mentoring to develop faculty compared to coaching or sponsoring. Training in mentoring and sponsoring was associated with increased use, but coaching was not. No gender difference was found in this study population. CONCLUSIONS: Chairs have less experience with coaching and sponsoring than mentoring. Personal experience being coached, mentored, or sponsored was associated with increased use of these tools. Formal training may increase use of mentoring and sponsoring. Contrary to our hypothesis, female chairs' experience with sponsoring was similar to their male peers.

Educational Needs and Preferences for Patient-Centered Outcomes Research in the Cystic Fibrosis Community: Mixed Methods Study.

BACKGROUND: Cystic fibrosis (CF) is a rare, life-shortening, multiorgan disease, the treatment of which has seen significant increases in the life expectancy of those with CF. Many advances in CF care are thanks to the dedicated and active participation of people with CF as research participants. Unfortunately, most CF research teams still do not fully partner with people with CF or their caregivers. OBJECTIVE: The aim of this study was to determine the interest, knowledge gaps, and desired format for patient-centered outcomes research (PCOR) training in the CF community. METHODS: We surveyed patients, caregivers, researchers, research staff, and diverse health care providers via list servers and social media outreach about their knowledge of, experience with, and preferences for PCOR training components. We followed the survey with 3 small-group discussion sessions with 22 participants who completed the survey to establish consensus and prioritize key learning components of a PCOR training program. We summarized results using descriptive statistics. RESULTS: A total of 170 participants completed the survey (patients/caregivers: 96/170, 56.5%; researchers/health care providers: 74/170, 43.5%). Among providers, 26% (19/74) were physicians/advanced practice providers, 20% (15/74) were nurses, and 54% (40/74) were from other disciplines. Among all participants, 86.5% (147/170) expressed interest in learning about PCOR, although training topics and training format differed between the patient/caregiver and researcher/health care provider groups. Before participating in PCOR, patients/caregivers wanted to understand more about expectations of them as partners on PCOR research teams (82/96, 85%). Meanwhile, researchers/health care providers desired information on how to include outcomes important to patients/caregivers (55/74, 74%) and the quality and impact of PCOR research (52/74, 70% and 51/74, 69%, respectively). Patients/caregivers were most interested in learning about the time commitment as a PCOR team member (75/96, 78%). Researchers/health care providers wanted to receive training about how to establish trust (47/74, 64%) and maintain confidentiality (47/74, 64%) when including patient or caregiver partners on the PCOR team. During follow-up discussions, participants emphasized the importance of addressing the traditional patient/caregiver and researchers/health care provider hierarchy by teaching about transparency, appreciation, creating a common language between the groups, and providing specific training on "how" to do PCOR. CONCLUSIONS: Our findings suggest CF community members are interested in PCOR. A high-quality training program would fill a current deficit in methodological research. This assessment identified the topics and formats desired and can be used to develop targeted training to enhance meaningful PCOR in CF.

Best Practices for Virtual Engagement of Patient-Centered Outcomes Research Teams During and After the COVID-19 Pandemic: Qualitative Study.

BACKGROUND: Patient-centered outcomes research (PCOR) engages patients as partners in research and focuses on questions and outcomes that are important to patients. The COVID-19 pandemic has forced PCOR teams to engage through web-based platforms rather than in person. Similarly, virtual engagement is the only safe alternative for members of the cystic fibrosis (CF) community, who spend their lives following strict infection control guidelines and are already restricted from in-person interactions. In the absence of universal best practices, the CF community has developed its own guidelines to help PCOR teams engage through web-based platforms. OBJECTIVE: This study aimed to identify the important attributes, facilitators, and barriers to teams when selecting web-based platforms. METHODS: We conducted semistructured interviews with CF community members, nonprofit stakeholders, and researchers to obtain information regarding their experience with using web-based platforms, including the effectiveness and efficiency of these platforms and their satisfaction with and confidence while using each platform. Interviews conducted via Zoom were audio recorded and transcribed. We identified key themes through content analysis with an iterative, inductive, and deductive coding process. RESULTS: In total, 15 participants reported using web-based platforms for meetings, project management, document sharing, scheduling, and communication. When selecting web-based platforms, participants valued their accessibility, ease of use, and integration with other platforms. Participants speculated that successful web-based collaboration involved platforms that emulate in-person interactions, recognized the digital literacy levels of the team members, intentionally aligned platforms with collaboration goals, and achieved team member buy-in to adopt new platforms. CONCLUSIONS: Successful web-based engagement in PCOR requires the use of multiple platforms in order to fully meet the asynchronous or synchronous goals of the project. This study identified the key attributes for the successful practice of PCOR on web-based platforms and the common challenges and solutions associated with their use. Our findings provide the best practices for selecting platforms and the lessons learned through web-based PCOR collaborations.

A qualitative study of online support communities for lung cancer survivors on targeted therapies.

BACKGROUND: Due to recent treatment advances, people who have non-small cell lung cancer with oncogenic alterations are an important new group of cancer survivors. Little is known about lung cancer online support communities. This research was guided by two primary questions: (1) How do these lung cancer survivors engage in online support communities? and (2) What are the psychological, social, and physical impacts of such engagement? METHODS: Qualitative in-depth interviews were conducted with patients with advanced lung cancer (N = 40) to learn about their experiences with the illness. We used qualitative thematic analysis, inductive and deductive, as outlined by Carspecken. We adapted the framework for studying online communities developed by Zhang and colleagues to examine engagement with and impacts of involvement in online lung cancer support communities. RESULTS: Participants described engaging in the online community through (1) initializing communication through asking questions or sharing resources, (2) responding to others comments or inquiries, or (3) simply observing/reading others posts. Participation had physical, psychological, or social impacts, with benefits (e.g., empowerment) and risks (e.g., feelings of jealousy or misinformation) in each domain. Participants used various strategies to mitigate negative impacts, such as distancing oneself as needed. CONCLUSIONS: Online lung cancer support communities provide support, camaraderie, and specialized health information. However, there are also risks of online engagement, such as social comparison or accessing misinformation. Understanding the utility of online support communities for lung cancer survivors on targeted therapies and further addressing their risks are urgent tasks, especially in the post-COVID era.